End-Stage COPD: How to Plan and What to Expect

Chronic obstructive pulmonary disease (COPD) is one of the diseases with the greatest financial burdens worldwide and within the United States. Studies have shown that the average annual COPD-related expenditure is around $4,147. And while 51% of these costs are covered by Medicare according to the Centers for Disease Control and Prevention (CDC), that still leaves roughly $2,000 a year that COPD patients need to spend out-of-pocket. Combine this with the cost of aging and limited retirement funds and it’s not hard to see why COPD is such a major financial burden for so many people.

Without a doubt, the later stages of COPD pose the greatest burden for most people. It’s during end-stage COPD that you’re most likely to experience hospitalization due to exacerbation and you’re also more likely to be hospitalized for an extended period of time. Since symptoms tend to develop more quickly during this time, you’re also more likely to schedule more doctor’s appointments, use your medication more frequently, and seek out other treatment options for your disease. 

In this post, we’re going to discuss end-stage COPD (also called late-stage or stage 4 COPD). We’ll take a closer look at what exactly this term means, what to expect, and how to prepare for this stage of COPD in order to mitigate some of the physical and financial challenges it poses. If you have any questions, either leave them in the comment section below or reach out to your doctor to schedule an appointment.

What is End-Stage Chronic Obstructive Pulmonary Disease?

Since COPD is a long-term condition that progresses slowly, it’s generally divided into four different stages. These stages help healthcare specialists identify the symptoms of your disease, predict the prognosis of your disease, as well as your life expectancy. And because COPD manifests differently in every patient, that also means the stages are going to look different for everyone. While researchers have a good idea of the average life expectancy of someone with COPD, what ultimately matters is your own health. In this way, it’s often better to think of COPD as a sort of “catalyst” for other health issues.

The best way to know that you’re approaching late-stage COPD is based on your symptoms. Someone with end-stage COPD will likely experience similar symptoms that they’ve experienced for many years such as coughing, breathlessness, fatigue, or chronic pain. In end-stage, however, these symptoms become significantly more debilitating to the point where they may need to rely on caretakers, friends, or loved ones to take care of them. They’ll also experience more frequent trips to the hospital due to flare-ups and exacerbations.

The term “end-stage” is controversial in many ways because it can imply that the patient doesn’t have much time left to live, but this isn’t always the case. Even when it’s evident that symptoms are increasing in frequency and severity, that doesn’t mean that won’t outlive them and go on to live many more years. However, using this term can be helpful when it comes to planning and the approach that you use to treat your disease. For example, some people prefer to switch to palliative care which is a type of specialized medical care that’s focused on optimizing a patient’s quality of life and ease discomfort.

How to Recognize End-Stage COPD

As aforementioned, late-stage COPD looks different for everyone. This is why it’s important to maintain open lines of communication with your doctor who can provide you with detailed information about your disease prognosis as well as advice on how to plan. Generally speaking, however, you’ll be able to notice an increase in the frequency and severity of symptoms you’re experiencing. Take a look at some of the symptoms below and see if you notice any similarities to what you’re experiencing.

• You experience heavy coughing or wheezing throughout the day
• You experience shortness of breath even while at rest
• You lack the energy or will to maintain your diet
• You’re becoming more reliant on friends and family for simple tasks
• You experience dizziness, confusion, or trouble sleeping
• You experience more frequent or severe exacerbations that lead to hospitalization

Another way to recognize end-stage COPD is by performing a spirometry test. A spirometer is a simple device used to derive two different results: Forced Expiratory Volume in one second (FEV1) and Forced Vital Capacity (FVC). Combined, these results will tell you how well your lungs are functioning, and if you have spirometry results already, you and your doctor will be able to compare them to determine how quickly your lungs are deteriorating. FEV1 refers to the total amount of air you can force from your lungs in one second and FVC refers to the total amount of air you can expel from the lungs in one breath.

From a diagnostic perspective, stage four COPD is recognized as an FEV1/FVC ratio of less than 70% or an FEV1 less than 30%. Even if your FEV1 is above 30%, however, your doctor may classify you as stage four severe COPD if you have chronic respiratory failure. Several other tests your doctor may use to diagnose stage four COPD include lung volume tests, gas diffusion tests which measure how well oxygen moves from the lungs to the bloodstream, and exercise tests.

How to Ease End-Stage COPD Symptoms

All-in-all, your treatment plan for end-stage COPD shouldn’t look all that different from your treatment plan for any other stage of COPD, but you may need to make adjustments based on your physical, mental, and emotional abilities. What’s more, there are several additional strategies you can add to your routine that can ease some of the pain and increase your comfort.

Supplemental Oxygen Therapy

Oxygen therapy is likely the most consistent treatment you’ve used since being diagnosed with COPD. Since COPD leads to progressive lung obstruction, one of the best ways to remedy this is by helping your lungs out and providing them with a higher concentration of oxygen. By doing so, your body will have the resources it needs in order to stay healthy. Unfortunately, many COPD patients use oxygen incorrectly or they use an oxygen device that doesn’t suit their needs and lifestyle.

When it comes to oxygen delivery devices, there are several options available to you. Oxygen tanks have been around the longest, followed by liquid oxygen tanks, home oxygen concentrators, and portable oxygen concentrators. While each of these can provide you with the oxygen you need, portable oxygen concentrators tend to offer the most comfort and convenience in end-stage COPD. There are many reasons for this, but above all, they don’t need to be refilled.

Rather than containing compressed oxygen like oxygen tanks do, portable oxygen concentrators run off of powerful lithium-ion batteries which allows you more freedom to move around on your own time. Instead of having to call an oxygen company to deliver full tanks to you, simply plug your POC into any wall outlet and you’ll be able to recharge your batteries. You’ll even be able to use the device while it’s charging. 

There are several different types of POCs you can choose from depending on your wants and needs. Pulse dose portable oxygen concentrators like the Caire FreeStyle Comfort or Inogen One G5 closely monitor your breathing and only deliver oxygen when you inhale. These devices are incredibly efficient, lightweight, and small. On the other hand, you could opt for a continuous flow portable oxygen concentrator like the Respironics SimplyGo which provides the user with a constant stream of oxygen. These machines tend to be slightly bigger and bulkier than their counterparts.

Nutritional Counseling

Like we mentioned before, malnutrition is a significant problem that many stage-four COPD patients face. Symptoms like breathlessness and chronic fatigue can lead to a situation where patients simply don’t have the energy to eat or they don’t get the same satisfaction from it that they used to. Conversely, it could lead to someone choosing foods that are convenient and provide a quick energy boost. Unfortunately, these foods tend to also be filled with sugar and other problematic ingredients that don’t provide your body with the nutrients it needs.

If either of these situations sounds like you, it might be a good idea to consider nutritional counseling. This is a type of therapy that’s focused solely on your eating habits and it attempts to break down any barriers you might be facing that are preventing you from sticking with the diet that your doctor has provided for you. Contrary to popular belief, nutritional counseling isn’t just for people facing weight issues, it’s also extremely beneficial for people with chronic illnesses like COPD who struggle to get the nutrients they need. It’s also useful for anyone who believes that they have “unhealthy” or “unproductive” eating habits. 

Complementary Therapies

Complementary therapies are any therapy that can help you ease the burdens associated with late-stage COPD. As you can imagine, this varies greatly depending on the patient because everyone faces different issues with their disease. For some, this might mean attending cognitive behavioral therapy (CBT) sessions in order to prevent anxiety or depression, for others it could mean speaking with a spiritual or religious leader who can help you settle any concerns or fears about living out the later stages of your life.

Cognitive behavioral therapy is a type of psycho-social intervention that’s focused on correcting negative or inaccurate thought processes or actions. It’s a type of therapy that’s become very popular among older adults, especially those with chronic conditions, who want to seek more fulfillment in their daily lives. CBT takes place over the course of several weeks, months, or however long it takes for the patient to feel comfortable on their own. 

Another type of therapy you might want to consider when it comes time to plan for end-stage COPD is massage therapy. Studies have shown that anxiety can cause a lot of tension to form in our bodies and this tension can lead to more anxiety. Massage therapy is a great way to break this tension causing us to feel better both physically and mentally. According to this medical report, there are two reasons massage therapy is beneficial for COPD patients. Firstly, it causes hyperemia which is the increase of blood flow to different tissues. Secondly, it activates the lymphatic system which is responsible for draining your body of toxins.

A Revised Pulmonary Rehabilitation Routine

Most people are well-aware that with aging comes problems with mobility, endurance, and strength. It’s a natural part of life that we lose a lot of our physical abilities as we get older, but that doesn’t mean you can’t continue to do pulmonary rehabilitation. It simply means that you will need to find new ways to do it. Some people find that the best option for them is to switch to exercises that involve sitting as well as ones that don’t require them to leave the house or meet up with other people.

The important thing to remember is that any form of exercise will benefit your lung health, not just exercises that work your lungs specifically. In many cases, this mindset can even be counterproductive in late-stage COPD because most people don’t have the lung capacity to perform any strenuous endurance exercise that gets your heart rate up. Rather, targeting specific muscle groups in your body will improve your strength and circulation, thus easing some of the burden on your lungs. Studies have shown that muscle requires less oxygen to use and it produces less carbon dioxide as waste, ultimately resulting in less air that your lungs need to take in. 

The thing that we would like to stress, like we’ve done many times before, is the importance of consistency when it comes to your pulmonary rehabilitation. Just like maintaining a healthy diet, your exercise routine will be more effective if you are able to do it everyday without letting yourself fall back on your goals. Ideally, you should have someone like a friend or family member who can hold you accountable at least until you are able to do so for yourself.

Address Your Concerns With Your Doctor

Just like with any other stage of COPD, you’re going to want to work closely with your doctor in end-stage COPD. This is because you’ll want to make sure that your goals are in line with or at least not counterproductive towards your treatment goals. Like we mentioned earlier, end-stage COPD should be all about improving your comfort and reducing chronic pain. But this doesn’t mean that you should completely ignore the treatment plan that you’ve followed throughout your whole life with COPD.

Another reason to consult your doctor is because he/she will likely have some helpful resources for you in regards to finding other health specialists such as nutritionists or mental health experts. This will not only save you a lot of time but it will set you off on the right path. You should also make it a priority to visit your doctor more frequently so that you can make healthy choices that fall in line with your COPD treatment plan.

Conclusion

Chronic obstructive pulmonary disease (COPD) is an ailment that develops and progresses over the course of many years — sometimes even decades. This is why it’s important to always be adaptive when it comes to your treatment plan and lifestyle. While during stage one COPD, you were likely very active and took the time to travel as much as possible, stage four COPD treatment should focus more on improving your comfort and ensuring your psychological, physical, and even spiritual needs are met.

While you should take the initiative to do these things for yourself, it’s also important to consult your doctor to make sure you don’t leave out any aspect of your treatment plan in the process. Even in end-stage COPD, you’ll need to keep up with your oxygen therapy, dietary plan, pulmonary rehabilitation, and avoid environmental triggers such as pollution or airborne allergens.